Colin Grant, author of A Smell of Burning, a memoir of a younger brother with epilepsy.

The future is always a mystery, but the childhood plans of brothers and sisters have a special, poignant power as they retract into the fixed facts of adulthood. “So this is where the road was leading…” Unexpected talents may emerge, but so do unanticipated wounds.

Colin Grant’s brilliant, tender book is really two books: a history of our incomplete understanding of the puzzling brain phenomenon that is epilepsy, and the story of his beloved brother Christopher, the special one in the family, “the youngest, the most exuberant and happy”. This golden child disarms even “our tyrannical father Bageye”, subject of Grant’s earlier memoir of his Jamaican British family, Bageye at the Wheel. After Bageye leaves, Grant becomes a surrogate father to Christopher, sometimes watching over the younger boy as he falls asleep.

When Christopher’s episode of fainting as a choirboy is followed by a longer faint in the bathroom as an adolescent, it seems unimportant. But slowly, realisation settles on the family. Grant, then a medical student, has the painful task of naming what has hitherto only been a fear. His mother reacts with biblical grief: “Anybody see my cross? Anybody see my cross? … Yes, Lord!”

Today the possibility of gene therapy has come closer, surgeons are more conservative and more knowledgeable, and there are drugs like Epilim that effectively suppress seizures. One per cent of the world’s population has epilepsy, and Grant says there is likely to be at least one person with the condition in every carriage of a morning commuter train.

For some, however, the drugs come at a cost: a feeling that the self has been changed, a loss of acuteness to the sensations that make life worth living. This explains why so many people with epilepsy remain “non-compliant”. M, a writer in his 60s free from seizures for 20 years thanks to drugs, “still occasionally mourns his brighter self”. Musician Neil Young has eschewed them for 20 years, and Christopher “was on the drugs: off the drugs; on; off”.

A brain scan for children with epilepsy, launched by Great Ormond Street hospital, London, in 2010. Photograph: Frank Baron for the Guardian

In his thoughtful, global tour of epilepsy through the ages, it’s the blunt instrument of human attempts to cure the disease that Grant illuminates. The Spartans who tested infants for epilepsy by washing them in wine were no more deluded than the zealots of the middle ages who thought that those with the disorder were possessed by demons, or the 19th-century doctors who institutionalised or over-sedated them.

The part of the brain most active in a seizure is thought to be the insula, where higher sensations such as empathy are also located. But theories about the causes of epilepsy have veered wildly. Once marriage was deemed a good prophylactic, and “early sexual intercourse” was prescribed; later it was argued that sexual excitement led to seizures, so abstinence was counselled.

When the Catholic writer Graham Greene, as a young man, was believed to have epilepsy, he was told he should not marry, and came close to suicide. Astonishingly, right up to 1970, at the point in the Church of England marriage service when the congregation is asked whether they know of any impediment, the answer “Epilepsy” was enough to stop the wedding; worse, in India a partner’s “epileptic insanity” is still a reason for divorce.

Among the historical confusions that have clouded research on epilepsy are, first, its incorrect association with mental illness, and, second, its obfuscatory entanglement in moral meanings, even when they are good. Grant questions the “ticket to heaven” school of thought, in which epilepsy and its preceding aura, not always the smell of burning of the title, lead the sufferer to a higher plane of consciousness.

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Yet sometimes Christopher knows bliss, and the author confesses how tempted he is to dignify epilepsy with transcendent meaning, as Dostoevsky, in The Idiot, does in his character, Prince Myshkin. Though he looks honestly at the destructive effects the condition can have on ordinary lives, Grant also describes a number of high-achieving individuals who have either definitely or plausibly suffered from epilepsy – Julius Caesar, Saul of Tarsus, Joan of Arc, Dostoevsky, Lenin (who died after a long convulsion), Vincent van Gogh, the abolitionist Harriet Tubman, Emily Dickinson, George Gershwin, Ian Curtis.

But it’s always the enigma of Christopher that Grant returns to, with puzzlement, sorrow and, often, humour. As a teenager, Christopher’s passion was buying and renovating old cars. His high point, aged 18, is the acquisition of a shiny Alfa Romeo.

Alas, as Grant laconically remarks, “loss of consciousness is not compatible with driving”. When Christopher passes his driving test (“God failed my mother”), it is Grant who reluctantly obeys her wordless entreaty and – after failing to reason with his brother – accompanies him on a road trip. As they drive along the motorway, Grant’s pleas grow “increasingly desperate, like a jilted lover”. It is almost a relief to the reader when Christopher’s eyes start to go blank, the seizure unfolds and the car “slides across the motorway as if on ice”.

Neither of the brothers dies in the crash. When, as an adult, Christopher comes to live with Colin, the phone calls in the early hours, producing dread, or the knocks on the door from the police, always mean that Christopher has had a seizure.

Christopher’s attitude to his condition and to the medical profession is oblique and creative, the initial anger and frustration masking itself increasingly in deadpan humour, mystification or turning inward. He says he is making a film about epilepsy, but shows Colin a blank, blinking screen: “This is not a joke, joke t’ing.”

The author tries to mirror this obliqueness. “You had a visitor,” he tells Christopher as he lies in the liminal, dreamy state that follows an attack.

“Any message?”

“He said he’d come again.”

And he does come again, until the terrible night with which this book ends, when Grant has to ask the despairing paramedics to let him try to massage his brother’s heart back to life. His subsequent sense of having failed Christopher will not be shared by the reader.

This book is an extraordinary work of love and art, which left me choked with tears. It manages that most difficult task for a memoirist, to bring a real human being unforgettably to life while leaving his essential mystery and individuality intact. It’s as if somewhere, outside the unforgiving single line of time where statements about what happened must be made, Colin Grant allows an aura of all the unlived possibilities of Christopher’s radiant childhood to linger.

Thirty years after his mother asked his father to leave and not come back, writer Colin Grant set out to find the man he could only remember for his anger, his gambling – and his impeccable dress sense